Almost There, But I Wouldn’t Change What I Learned

I’m wrapping up two weeks of vacation in my favorite place on earth. My family has had laughter, rest, time to catch up with family and best friends and a lot of good food while we celebrate the 4th of July and then some.

As these last few weeks have passed I have thought about the first few days since December 2nd when Mom started her cancer treatment and I pushed the button to wait to cross the street on Morehead and woke up later in the ER. I could not have dreamed the scenario that would unfold. Goodness, it seems like years ago. Months later, Mom is so healthy now. She is strong, full of life, and full of strong blood cells!! I too am much stronger, shaken, but stronger, deep down, in ways people can not see, in ways you can not touch, but in ways that I know I can reach when in need.

I have learned that God is there, always listening, my partner in everything, ready, always on call, in ways I did not fully recognize previously. In my loneliness He can comfort, in my weakness He is my strength, when I am dizzy, He straightens my path, when my words are lacking, He finds them, when my days are too long, He gives me rest, when confusion is too much, He gives me my husband, my sons, my Mom or my best friend to explain on my behalf, when danger may linger, He sends a stranger to call for help, when in need, He has surrounded us with a crowd of sacrificial friends willing to help with rides, food and anything else we have needed. God IS our provider, in every sense of the word.

I have missed my Grandmother and thought of her every single day since she died. Many of those days have felt like my life was spinning out of control and yet I was glad she wasn’t here because I knew it would be too painful for her to be here and see the pain our family was going through. It made me thankful again that God took her when He did to relieve her of that burden. God is so good. Just another reminder of how He has comforted me even through death.

I still have 5 days before I can hold the keys to the car in my hands again and I am cautious as I wait for that day. I know anything can happen between now and then. The difference is, if it’s bad, it will suck, we will survive, as a family, with the help of our extended family, because our God will carry us through anything we ask Him to help us through. I’m still processing the reality that I will deal with epilepsy and the possibility of seizures for the rest of my life, but I will continue to use my filter-less mouth to bring as much awareness to this disorder as I can. There has to be purpose in this brain trauma somewhere, right???

So if you had not been able to drive yourself anywhere for 7 months where might be the first place you would go? Good question right? I have several doctor appointments next week…boring. My oldest needs supplies for his upcoming mission trip…big stores and I don’t have a good record, plus he has to do that with me. We need groceries…boring. Well, just so happens I have an amazing brother and sister in law who keep me stocked in massage gift cards! SCORE! I have already booked a Wednesday morning massage! What better place to drive for my first day out, right? A little pampering for me! Yay for my awesome bro and sis in law who know how to spoil me! Can’t wait!

I wish I could thank everyone that has helped us but I know I would forget someone and I have a terrible fear of leaving people out. So please know that if you have helped us in any way, you have been prayed for because of the gift you gave our family. You made what could have been a horrible 7 months much easier for all of us. Thank you, thank you, thank you.

© Gatewood Campbell, July 2014

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Finding It

I am allowing myself to count, or at least I am telling you I am counting. I can see the end of this trial. I am no longer counting in weeks but I am counting in days. We have had so many countdowns going on around here with the end of EOGs, EOCs, exams, school, leaving for camp, Montreat, Justin’s 16th birthday and when Mom can drive. It has been hard to keep up with which countdown we are discussing! One thing is certain, my quiet house is suddenly full of voices and that makes me so happy.

I have had a LOT of time to digest the changes to our lives that epilepsy and brain injury brought me. Some days felt like forever. Justin had to get up at 5:25 for school. Yes, it is insane. Then round two starts at 6:45. Then it is just the dogs and me until 3pm. For several months I couldn’t work out and honestly I just slept most of the day. I was so drugged up playing with so many medications I didn’t know which end was up waiting until July felt like eternity. Mom was sick, I couldn’t help her. I couldn’t even grasp how she was because I couldn’t get to her and I was angry. I hated being dependent on people every time I needed to go anywhere. I felt so much pressure to have my act completely together anytime I asked anyone for anything because I knew I was already inconveniencing someone and I didn’t want to be any extra trouble.

You do not know what real freedom is until you don’t have it anymore. Truly, there were days, 3 or 4 in a row where I did not leave the house. Sure I walked the dogs. But days that I did not get in the car, did not have the need to, as Emmer would say “put myself together” and get out. I know how she felt those last years when she was stuck in her room in healthcare and she didn’t know what day it was. Were it not for the kids coming home at 3pm the beds wouldn’t have been made and I probably wouldn’t have showered. Everyday, by 3pm, the house was presentable and I was at least physically presentable. Some days were wonderful, some were normal, some were sad, some were dark and desperate. I had never faced the reality that I will live with epilepsy and seizures for the rest of my life. I always planned that we would control it with medicine and I wouldn’t have to worry with it. That is the most likely case, but I do need to be prepared for the possibility that may not happen. There is always the chance that I will have more seizures and be back in this same place again. Mentally I needed to swallow that big pill, along with another 5 or so. I have seen that I can do this. If I have a seizure tomorrow and the clock restarts we will all deal with what comes our way. Our Lord is ever faithful. He has shown me that, day in and day out. When I was on my knees in prayer and when I was on my knees in tears. He was, is and will be faithful.

The little things have meant so much. People have called and made time to take me to lunch. Those were days I really looked forward to. I got to put myself together! I have a couple of special friends that would drop notes in the mail every so often just to say hello and they were thinking of me. Those notes always arrived on days that I needed a little extra hug. To me, weekly rides for the kids were huge, but the people providing them say they were little so I’ll call them little. These little rides home from Chess Club, baseball practice and games, church, small group, drum lessons, play dates, sleepovers, I could go on and on. Several people have taken on my kids for this entire seven months and are transporting them where they need to be on a weekly basis. They show up without reminders and it means all the world to me. These adults willing to go out of their way mean our kids don’t have to sacrifice something they enjoy because of my health. As parents you all know what that means to us. These are the things I remember…quiet acts of kindness.

Getting moving again. This was a hard one. The doctor wouldn’t let me work out for some time after my seizures. Then she let me slowly begin walking and lifting weights on a modified routine. Anyone who has worked out on any level of intensity knows that you lose it very quickly. I had run a half marathon in mid November and my first seizure was Dec 2nd. By the time I was finally allowed to work out in March I was up more than a few pounds and down more than a few levels of strength and endurance. Frustrated to say the very least! I didn’t want to run with anyone because I was too slow. People at the gym were generous when my instructor told the class about my situation and I had many offers for rides to class. So I followed the rules with weights and began to see progress there. This running thing, this was a different beast. I had been walking so I thought I would be able to run without too much trouble. One stinking mile. Tears tears tears. I felt so pathetic. The road has been my go to for years now. It’s my zone and if ever I needed a zone it was now. If I can’t have running this is just not gonna work for me. I felt so defeated. For weeks I would try to go out and run. Sometimes I would manage a couple, maybe 3 miles, other days hardly 1. I would try consoling myself by saying at least I was doing it. I wasn’t consoled. I felt robbed. It would take me back to that angry place again, angry that this epilepsy had stolen something else from me. Then, in those moments He would speak to me, through the lyrics to music.

“I don’t know where to go from here. As long as I know that You are near. I’m done fighting. I’m finally letting go. I will trust in You. You’ve never failed before. I will trust in You. If there’s a road I should walk Help me find it. If I need to be still, Give me peace for the moment. Whatever Your will, Can you help me find it? I’m giving You fear and You give faith. I’m giving you doubt. You give me grace. For every step I’ve never been alone. Even when it hurts, You’ll have Your way. Even in the valley I will say, with every breath You’ve never let me go. I will wait for You. You’ve never failed before. I will wait for You.” By Sidewalk Prophets “Help Me Find It”

My “It”. I needed to swallow epilepsy and own it. I finally felt like I could say without so much embarrassment that I have epilepsy. I’m a Mom and I am at home with my family. And the rest is really none of your business. No I can’t really say that, but I can say it in my head until I think of something a little snazzier. I am proud of my family and I am fortunate and blessed to be with my children everyday! Now God knows I love the road and I believed He wanted me to have that freedom again.

My sweet niece in Colorado called me in early spring to tell me she wanted to run the Bolder Boulder. It’s a huge Memorial Day attraction founded by Olympian Frank Shorter in 1979. The race ends in the University of Colorado’s Folsom Field with the Finish Line on the big screen for added excitement! She told me she and her entire family were running the race together. This was my “It”! My mind was racing. I was not letting my brother and his whole family do this without me! I called my best friend, Sharon. She was the person who asked me to run a half marathon with her way back in 2005. I knew she wouldn’t turn me down. I asked her to fly to CO with me and run a 10K. I’m pretty sure she didn’t even ask me when it was before she said she would go. Next, Mom. Of course she would go. I called my brother and asked if he could make room for 3 more people that weekend. No problem! I had my goal and I had a couple of months to get ready for 6 miles. I hadn’t run more than 3 miles but I was certain I would be able to do this.

Fast forward to Memorial Day weekend. I had some really bad runs and one really good 4 mile getting ready for the race. I had some great workouts and one right before the race that I had to completely bail on where the people at the gym said I looked dazed and confused. That’s always reassuring. I was so anxious leading up to the race, it was ridiculous. I was afraid to be away from home. I have been home SO much that I’m actually uncomfortable leaving home now. That’s another issue I have to deal with too. Anyway, my prayer warriors were at work and I knew God is faithful. I knew He had not failed me. I knew I needed to step outside of my comfort zone in order to feel His power rain down on me.  Well, guess what? Elevation did not bother us, lack of training did not bother me. I smiled and then I cried like a baby after crossing the finish. I took it all in and looked to the heavens, feeling like I was just a little closer standing there at the base of the Flat Irons. I thanked God for His faithfulness before, during and now. I closed my eyes and the months flashed by and I felt the ground beneath me and I was so grateful for the road I had traveled to cross that finish line. I had given Him fear and doubt and He gave me faith and grace. For every step I was never alone. Indeed He helped me find It. I just needed to rekindle my love with Him.

That's me in the pink! I found my It at the Finish!

That’s me in the pink! I found my It at the Finish!

So officially it is only 34 days until I get the keys back. I feel like I need a refresher course to hit these crazy roads first. I also wonder where I will go? Isn’t that funny? All these months of being at home and learning to consolidate trips to now I wonder where I might need to go? Thank you for being part of this journey with me. For supporting me by reading my posts and giving my an outlet for the crazy thoughts that wonder around in my silly little mind. I hope I give you some laughs, some insight into life that is different from your own and maybe a little bit of something to chew on for another day.

© Gatewood Campbell, June 2014

 

 

Just a Little Bit Longer

“How much longer?”

Everyone is asking. Seems like it has flown by to everyone else, and in many ways it has. It seems like forever to me, and to others it has felt like that as well. How much longer until I can get behind the wheel? I have 2 more months. I am so tired, and embarrassed of having to ask people to do something for me. This is so difficult for me. Boy am I really being refined there!

Truth is, the closer it gets the more anxious I am. Each day I am more fearful that I am going to have another grand mal seizure and lose consciousness, thus starting the entire process over again. I am afraid that the black hole that this new medicine has created in my brain will make me too much of a lunatic to drive with any sense. Will I remember how to drive? Or will I more likely resemble an inexperienced 15 year old with a permit? Gasp, been there, doing that….deep breath in through the nose….out slowly through the mouth…and repeat until you reach your destination. 

I’m surrounded by people, loving family and friends, yet epilepsy and the medication we have to take, force us into an obscure place that others cannot understand. So often it isn’t epilepsy that causes the problem, it is the medicine that is the evil. It takes away the person that we once knew when we looked in the mirror. I know that I do not make coffee in the laundry room, yet I found myself walking into the laundry room with coffee and filter in hand looking for the coffee maker. On more than one occasion I have looked at my 10 year old washer and dryer not knowing what to do with the knobs to make them start. I was at the gym and I forgot how to do a sit up. I can’t even explain that one. I just knew from how my body felt that I was doing it incorrectly. I couldn’t form a correct sit up. Simple facts that I have always known and been able to recall are just gone. I hope I can run again without being dizzy. Conversation is so hard. My black box brain is so empty. The words come so slowly, each word is so delicate and so cautious. I’m confused by the smallest challenges. My fourth grader has long surpassed what I can help him with in his school work. I have a college degree and I can’t help him with his homework. It is degrading. Parts of who I was… vanished. So who am I going to become? What am I going to do? Change is hard. No one likes change. This medicine is good; it is keeping me from having seizures. I have to remember that.

This has been a hard winter on many levels. It was so unexpected. I’m not used to dealing with the new side effects of this person that has been created and working so hard to dig up the layers beneath to find me. I want to be the mom that I used to be for my children and the wife that I used to be. I want to be the friend that I used to be. I want to run like I used to. I want to be able to work out like I used to.  I want to juggle those things and more. I want to give as much as I receive. This spot, this place, it is so uncomfortable for me.

On Sunday these words from Always by Kristian Stanfill spoke to my heart. “Oh my God, He will not delay, My refuge and strength always. I will not fear, His promise is true. My God will come through always. Always.”

A few weeks ago I was cleaning out some things and I stumbled on 3  greeting cards that I had tucked away for safe keeping some years ago. They were mixed in with some other things so obviously they were something of meaning so I pulled them out to read. One of them was from my Grandmother. All it said on the inside was

“Peace!

         Emmer”

There was no date. The card had a little bird on the front so it didn’t indicate a holiday, but she wouldn’t have wasted money on a holiday card anyway. She likely just sent me a card during some difficult time. I could see her gentle teary eyes and feel her soft arms wrapped around me. I needed that little hug.

I know God will not delay. I know He is my strength. I know His promises are true and I know He is all I need. I know He hears me when I am anxious, He knows my fears before I know them and I know His ways are better than my own. I know that, I know that, I know that. My God will come through always.

This journey has been a doozie. How much longer is really anyone’s guess, but I am ready for this roller coaster to come to a safe and complete stop. Oh yeah, I can’t ride roller coasters. I forgot.

© Copyright Gatewood Campbell, May 2014

The Four Letter F Word

F E A R. It can absolutely paralyze you. It has paralyzed me.

I know we should not fear. I know Jesus teaches us to live by faith. Everyone tells me not to be afraid. But it is so easy to tell someone not to be afraid. I’m afraid that a brief moment of confusion is an oncoming seizure. I’m afraid that the loud echo of a stereo is actually an oncoming seizure. I’m afraid that the persistent beeping of registers in a store is actually a sound being created in my head indicating a seizure. I’m afraid that if something catches my eye, there might not be anything there and my world is about to shake violently. I’m afraid that when things suddenly slow down they are about to speed up very quickly. I’m afraid of another concussion. I’m afraid that people will be afraid to be around me because they will fear I will have a seizure in front of them. I’m afraid of having a seizure in public. I’m afraid parents won’t want their kids to come play with my children because they fear I can’t adequately supervise them.  I’m afraid that maybe I can’t adequately supervise them. I’m afraid the seizures will never stop. I’m afraid of going to sleep one night and being taken by epilepsy.

I am trying so hard. I know I am fortunate. I know it could be so much worse. I know there are so many other people dealing with far worse situations. I know I should be focusing on the things that are good and not the things to fear. I know what Jesus has taught us to have faith and not to fear. I hear what each of you are telling me. I’m trying, I really am. But this F E A R, right now it is just paralyzing.

© Copyright Gatewood Campbell, February 2014

How Did I Get Here?

I blinked. My world shook. I looked into the eyes of a stranger and asked “How did I get here?”

Epilepsy. It came into my life from a fall nearly 9 years ago. One might think I would be used to it by now. Not so. I’m thankful for the quieter years when my seizures were, for the most part, controlled by medication. I lived in a world shaded from the truth that epilepsy changes your life forever. I’m glad I had those years in the shade, but I have walked out into the sun now and I do not like it.

In the last two months I have had two grand mal seizures. Both times I was alone on a sidewalk. The first time I was caught off guard and had no time to react and have the scars to prove it. The second time I had about 10 seconds to know I was in bad trouble. All I could think was SAVE THE HEAD and I moved to the grass and dropped to my hands and knees. I never want a staple gun smashed into my head ever again. I successfully saved my head. But I found myself looking into the eyes of a stranger once again and asking “How did I get here?” Again, another gentle voice told me I had a seizure. Best I recall I thought something like, oh @&^%$#. I don’t remember much after that. It is weird that each time I have a brief memory with an EMT and then I lose an hour or so and pick back up when things are calmer and I’m settled in the ER. Settled in the ER, now that is an oxymoron if ever there was one!

It is all overwhelming. I just didn’t realize how my life would change. I didn’t realize how the lives of my family would have to change so much. I don’t know how to adjust so quickly. I want to go back into the happy shade of controlled seizures. I don’t like the sunny side of seizures at all. After the first seizure I was counting down until I could drive again. I just thought it was a fluke and I didn’t expect another one. After the second seizure, I realized it was more than a fluke. Now we are dealing with more than just small breakthrough seizures where I maintain consciousness. The driving clock reset yet again. I quit counting down. It feels so far in the distance.  I don’t worry about driving. I just want to be seizure free. You see, there is no cure for epilepsy. There is coping, by means of medication or surgery, but there is no cure. People with seizures, people with epilepsy; we face the dreaded “pre-existing condition” and the grind of brain changing chemicals everyday. This is my life, and 9 years later, I just NOW realize it.

I am thankful, don’t misunderstand. I am blessed in ways that can not be measured, but I live under some element of fear everyday. I have to think through where I am going and “what if?” I am just like everyone else and wish we knew that everything would be ok. That isn’t reality though. So I have to plan ahead. My husband needs to work nearby just in case that number he doesn’t know shows up on his cell phone and the caller says “Mr. Campbell?” He knows without the caller saying anything else this is not Publisher’s Clearing House calling. I don’t like that he gets those calls. I don’t like that when my son comes home and I’m not here, he instinctively texts us asking where we are. I don’t like that fear can transcend generations. I have watched the fear of my seizures pass through four generations of my family now. The fear makes me mad. Then I circle back around to being mad at epilepsy all over again. I see how people who don’t know much about epilepsy talk about it and it upsets me. I want to be understood. I want to educate them, but sometimes I get tired of trying to teach people to be accepting. Sometimes it is just easier to be quiet and hide.

I don’t know how I got here. I don’t know why I’m here. I don’t know when it will be better. I know I am not supposed to be afraid, but I am. I know I am not supposed to worry, but I do. I know I am not supposed to ask why, but I do. Normal is such an abstract idea, I am not looking for normal. Furthermore I have had too many concussions to remember what our normal was. I just want to feel safe. I want to blink and for my world to never shake again. I want that for me and I want that for our family. Is that so wrong?

© Copyright Gatewood Campbell, January 2014